RE: A question for - update and LP/LS?

[Guest guest]

, maybe your regular doctor will give you a prescription for

Clobetasol – that is the only thing they give you for LS. Sometimes it

irritates the skin, and then there are other weaker strengths.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of euc1109 s

Sent: Wednesday, February 20, 2008 10:29 PM

To: VulvarDisorders

Subject: Re: A question for - update and LP/LS?

Well, today hasn't been a very good day.....I

went up

to see Dr. Quesada (pain mgmt doc) and we looked at

our options. We could change my medications, try a

compounding cream to target the dorsal clitoral nerve

topically, or try a dorsal clitoral nerve block. I

decided that the actual block makes me a little

nervous because it's so close to the pain so we are

going to try the compounding cream which is made up of

a few things like neurontin, lidocaine, and

anti-inflamatory and an agent that makes it " soak "

(can't think of a better word) deep into the tissue.

He said if it's going to help at all then i should

notice a change within a week or so.

However, I've been thinking more and more about the

possibility of having a type of lichen under the

clitoral hood and have been trying to set up an

appointment with Dr. in Boston, but they lost

the paperwork the first time I sent it back and this

time they are still waiting to get my records and

letter of diagnosis from my doc. Well I decided to

examine the area tonight and I honestly don't know if

I'm going crazy or not, but I feel like my tissues are

starting to change a bit. It seems like my hood is

getting a little longer and that one of the sides of

the hood is getting " smoother " if that makes any

sense. I am truly concerned that I have it under the

hood and it would kind of make sense as to why nerve

blocks and nerve meds haven't helped and why I don't

get shocking pains but instead a burning ache. I feel

like a lot of my pain is coming from the very

beginning of the underside of the hood (sorry if

that's too much info). But, I am petrified that I

won't be able to get in to see Dr. until it's

too late and fusing and/or atrophy occurs (if it is

lichen). I know how hard it is to get in and see her

and I also know how fact lichen can cause

fusing/atrophy and i'm just really upset and worried

right now. I'm going to call around tomorrow to see

if I can get in anywhere else sooner than with her,

but I am afraid that i'll get someone who only knows

the very typical white plaque patches that I don't

have and they'll just brush me off.

Does anyone know of another person in the New England

area besides , that is easier to get in with

but knows their stuff about LP/LS?????? If I can't

get in with anyone, is there a medicine that I can try

to get from a current doctor that they give you for

LP/LS until I can see her so at least if it is I can

prevent fusing/atrophy?

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[Guest guest]

,

I forget where you are but it sounds like New England. I am on the

North Shore of Boston and don't know how far you are willing to travel

but I see the most amazing female chiropractor...

Melinda

[Guest guest]

,Hi. I really feel for you girl--I do. I have definitely been in your place. I think is the doc who knows her LP. I was just in the beginning stages of LP with a negative biopsy and she diagnosed me. Can your doc fax her the referral letter with your diagnosis on it? Estrace is the really the thing that is recommended on the LS/LP group for fusing/atrophy. I know it is hard to see under the hood. Do you have any other V pain other than in the clitoral area? Try taking a warm bath prior to going to bed each night to see if that helps with the jolts/burning/aching pain. That sometimes helps me. Good luck .Mindy> > Does anyone know of another person in the New England> area besides , that is easier to get in with> but knows their stuff about LP/LS?????? > > > > > > > > > > ____________________________________________________________________________________> Looking for last minute shopping deals? > Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping>

[Guest guest]

Hi Melinda, Yes, I am in Connecticut about 10 minutes from the Mass border by Sturbridge. I am interested in seeing this chiropractor, maybe even just once to see what she thinks. Also, I know you have either LP or LS and see Dr. - do you have any noticeable changes around the clitoral area? Did they do a biopsy? What have they prescribed you for medications? I am afraid that if it is LP or LS I won't be able to get in until it's too late and the hood will have fused if not already. Have you heard of any other vulvar specialists for skin disorders around here besides and Boardman (rhode island)? Both have a few month waits.....

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[Guest guest]

Hi Mindy, No, I don't have any other v pain besides the clitoral area, and the more I think about it, the more it seems like it is coming from under the tip of the hood, which makes me think it's LP or LS. All the doctors I have seen says it looks normal, which is why I'm so worried that by the time I get in to see someone that really knows their skin disorders it will be too late. And of course, Dr. Conway (my doctor) is on vacation until March 3. Do you have clitoral pain as well? Can you see any skin changes? How would you treat it if it is under the hood? How do you get the cream stuff in there without causing even more irritation?

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[Guest guest]

,

My chiro. is in Gloucester, so it might be a bit too much of a trek -

want me to see if she knows of anyone closer to you that she would

recommend?

I do have LP...umm, under my hood is really red and tender, and

nothing we have tried has helped. I just live with it at this point -

they would like to try to get this under control, but can't do much

while I'm pregnant.

I didn't have a biopsy because I was so far gone that they could tell

just from looking. =( I tried a TON of meds. Lots of topical

steroids, hydrocortisone suppositories, clindamycin cream, E & T (I

still use the E but can't use T while pregnant), and then all the

over the counters. Also tried nerve meds like cymbalta/lyrica and

lidocaine cream. No go. I should explain that while LS is stinky, it

is generally able to be controlled in time. LP is much more tricky

and does not respond to treatment as well, typically speaking,

although of course there are exceptions to every rule. LP can also

show up in other areas, like Mindy who has it in her mouth. Oral LP

is much more common than vulvar LP. But vulvar LP is harder to treat

and does not always go into remission (which oral LP can, from what

I've read).

To be honest, I don't know how my clitoral area looked before this,

because I never looked, so I don't know if I have clitoral atrophy or

not. I do know I lost a lot of my inner labia, almost all of them. I

do internal PT and use dilators when we aren't having intercourse

often to prevent vaginal fusing as well.

I don't know of anyone around other than Boardman or . I got

into in a month, but that was 2 years ago and obviously they

have gotten busier. Sorry I can't be more help. We should just meet

in the middle some time and hang out though! =)

Melinda

[Guest guest]

Melinda,

Your information was very helpful- thank you. And if

you could, I would love it if you could ask your

chiropractor if she knows of someone closer to me- who

knows, anything at this point is worth a shot.

So, do you have LP anywhere else besides under the

hood? If that is what I have, that is the only place

i think i have it and to me that is just so strange

that it would be under the hood like that. You're

" redness and tenderness " sounds similar to me, however

i can't really see under the hood (i'm not even sure

how the doctors would) but the very tip of the

underside of the hood where i can just about touch is

very tender and irritated- these are the things that

are making me question lichen. I'm sorry that you

haven't been able to find anything to help you-

there's got to be something that will eventually help,

not to mention with the increase in

understanding/awareness of vulvar issues and medical

advances there HAS to be something

eventually....right? Have you found anything that

seems to make the pain worse (food triggers or

anything like that)?

we should meet up sometime!

erin

--- spanishmiss430 wrote:

> ,

> My chiro. is in Gloucester, so it might be a bit too

> much of a trek -

> want me to see if she knows of anyone closer to you

> that she would

> recommend?

>

> I do have LP...umm, under my hood is really red and

> tender, and

> nothing we have tried has helped. I just live with

> it at this point -

> they would like to try to get this under control,

> but can't do much

> while I'm pregnant.

> I didn't have a biopsy because I was so far gone

> that they could tell

> just from looking. =( I tried a TON of meds. Lots

> of topical

> steroids, hydrocortisone suppositories, clindamycin

> cream, E & T (I

> still use the E but can't use T while pregnant), and

> then all the

> over the counters. Also tried nerve meds like

> cymbalta/lyrica and

> lidocaine cream. No go. I should explain that while

> LS is stinky, it

> is generally able to be controlled in time. LP is

> much more tricky

> and does not respond to treatment as well, typically

> speaking,

> although of course there are exceptions to every

> rule. LP can also

> show up in other areas, like Mindy who has it in her

> mouth. Oral LP

> is much more common than vulvar LP. But vulvar LP is

> harder to treat

> and does not always go into remission (which oral LP

> can, from what

> I've read).

> To be honest, I don't know how my clitoral area

> looked before this,

> because I never looked, so I don't know if I have

> clitoral atrophy or

> not. I do know I lost a lot of my inner labia,

> almost all of them. I

> do internal PT and use dilators when we aren't

> having intercourse

> often to prevent vaginal fusing as well.

>

> I don't know of anyone around other than Boardman or

> . I got

> into in a month, but that was 2 years ago

> and obviously they

> have gotten busier. Sorry I can't be more help. We

> should just meet

> in the middle some time and hang out though! =)

> Melinda

>

>

>

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[Guest guest]

,

I see my chiro. later today if I can get out in the snow, so I will

ask her...don't know if she'll know anyone, but it doesn't hurt to

ask.

So I have LP everywhere =) Or I should say, my vagina, vulva,

clitoral area. But it's well controlled everywhere except the

clitoral area. IE I don't have issues with intercourse much anymore

(although my swabs do still show some vaginal inflammation, I don't

experience symptoms of it), I lost alot of inner labia at first but

haven't lost any more for a long time. So it seems to be well-

controlled except for the clitoral tenderness. I am at a point where

I'm pretty comfortable pulling on the hood (gently of course) and

trying to see under at least a little by pulling it to the sides, and

I can see how bright red it is under there. I have felt nervous

lately about potential changes with the prenancy...my outer labia are

starting to kinda swell with the hormones changing, and it makes me

thing my inner labia are getting smaller! But they're not, when I

actually take a mirror and look, and my PT looks at me there twice a

month and she agrees. =) If you do have LP, maybe it is just starting

under the hood. My initial problems were only vaginal - no labia

changes, no clitoral pain or tenderness, it took years to get to that

point. Things which make it worse - jeans! I wear them occasionally

but very loose ones. And I drive a lot for work, so I am very careful

how I sit. Generally if I'm careful I don't notice it too much but

then out of the blue I'll just twist the wrong way in my desk chair

and bam! Sharp little razor pains under the hood. I never know when.

I did give up gluten and I do believe that has helped stop the

progression of this. Dr. had a vulvar dermatology specialist,

Dr. Margesson, look at me right before I got pregnant and she said

for LP, I look really good. So that was nice. I'll post later re:

chiro.

Melinda

>

[Guest guest]

,

I see my chiro. later today if I can get out in the snow, so I will

ask her...don't know if she'll know anyone, but it doesn't hurt to

ask.

So I have LP everywhere =) Or I should say, my vagina, vulva,

clitoral area. But it's well controlled everywhere except the

clitoral area. IE I don't have issues with intercourse much anymore

(although my swabs do still show some vaginal inflammation, I don't

experience symptoms of it), I lost alot of inner labia at first but

haven't lost any more for a long time. So it seems to be well-

controlled except for the clitoral tenderness. I am at a point where

I'm pretty comfortable pulling on the hood (gently of course) and

trying to see under at least a little by pulling it to the sides, and

I can see how bright red it is under there. I have felt nervous

lately about potential changes with the prenancy...my outer labia are

starting to kinda swell with the hormones changing, and it makes me

thing my inner labia are getting smaller! But they're not, when I

actually take a mirror and look, and my PT looks at me there twice a

month and she agrees. =) If you do have LP, maybe it is just starting

under the hood. My initial problems were only vaginal - no labia

changes, no clitoral pain or tenderness, it took years to get to that

point. Things which make it worse - jeans! I wear them occasionally

but very loose ones. And I drive a lot for work, so I am very careful

how I sit. Generally if I'm careful I don't notice it too much but

then out of the blue I'll just twist the wrong way in my desk chair

and bam! Sharp little razor pains under the hood. I never know when.

I did give up gluten and I do believe that has helped stop the

progression of this. Dr. had a vulvar dermatology specialist,

Dr. Margesson, look at me right before I got pregnant and she said

for LP, I look really good. So that was nice. I'll post later re:

chiro.

Melinda

>

[Guest guest]

Thanks Melinda. Your pain sounds different than mine,

but who knows, i'd rather find out what a vulvar

specialist thinks for sure.

And thanks in advance for asking your chiropractor for

me,

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